Patient information – providing for cancer patients outside the hospital

Our information nurses receive thousands of calls every year

A diagnosis of cancer can be a confusing time, where a lot of new information can arrive very quickly.

Patients can, of course, discuss things with their doctor whilst they’re in hospital or when they visit their GPs. But it can also be enormously reassuring to speak to someone else at a later date, under your own steam, once you’ve had time to reflect.

And a hospital or surgery isn’t always the best place to look up or take in information about cancer.

You only have to look at the demand for Cancer Research UK’s patient information services to see that there’s a real need for them.  Currently we run a variety of resources – the recently relaunched CancerHelp UK website; our forum Cancer Chat; an e-news letter Cancer Spotlight; and our Cancer Information Nurse service.

Our nurses are there to answer individual enquiries from the public about any aspect of cancer and its treatment, through our freephone telephone helpline and our email service.

Although demand to our service is high (we respond to around 10,000 phone and email enquiries every year), we’re always very keen to get hard evidence that we‘re giving people what they want, and that they’re satisfied with what they’re getting from us – so each year we carry out a user-satisfaction survey.

Survey results

On the whole we get a very positive response, recording high levels of satisfaction – typically, 97 per cent of the respondents said they would use us again and 97 per cent of telephone use – and 99 per cent of the email users – stated that they would recommend us to others. And this year, one key question we asked was whether contacting us was worthwhile.

Reassuringly, we received an overwhelmingly favourable response to this question – 98 per cent of telephone and 97 per cent of email users said they felt it was worthwhile.

Given the range of services we now provide (the most recent addition being our Cancer Chat forum) we were also interested in seeing if people were using more than one of them.

Gratifyingly, we found that there was indeed a proportion of people who not only contact the nurses but also seemed to be using CancerHelp UK and Cancer Chat, as well as using our email and phone services. This is just the first hint of an emerging pattern, and we’ll be following this up in next year’s survey.

Real need

When doing background work before the survey, we found that there wasn’t a great deal of published research about how people use cancer information services.  However, from the literature that is out there, common themes did emerge from around the world.

One of the key conclusions from this research – which we also found in our survey- is that there’s a real need for these types of service. Patients and their relatives and friends need to access high-quality information at times other than when they are in hospital.

The results of our survey and the literature search are published in the November issue of the nursing journal Cancer Nursing Practice.  So hopefully more nurses looking after cancer patients will see that sign-posting their patients to services like ours – services that they can use when they’re not in hospital – is really worthwhile.

Martin Ledwick

Martin manages Cancer Research UK’s Information Nurse Team